Lifeline Online December 2016 NTSAD Family Newsletter special edition
NATIONAL TAY-SACHS & Allied Diseases Association
Dear Families, NATIONAL TAY-SACHS & allied diseases association
www.NTSAD.org President Brian Manning Executive Vice President Blyth Lord Scientific Advisory Committee Chair Frances Platt, PhD Executive Director Sue Kahn Director of Development Joan Lawrence Director of Family Services Diana Pangonis Conference Coordinator Becky Benson Office Manager Ingrid Miller
I hope you found time for yourself, and that you were able to cherish the quiet moments, create new traditions and memories, and most importantly, be kind to yourself through the holidays. We know there is no right or wrong way to do it. We have a lot to look forward to in 2017 - most importantly NTSAD’s 39th Annual Family Conference in Dallas, Texas. If you plan to apply for a Helping Hand Grant, be sure you get in the application by January 6th. The registration deadline is March 8th so there is time for that. Email Becky at becky@ntsad.org if you need an application sent to you. You can also download it from the NTSAD website. The link and deadline is under the NEWS section. As always, if there is something missing that you’d like to see featured in future issues let me know. And...I welcome volunteers to help pull the content together for these issues. Just let me know by sending me an email or giving me a call. Fondly, Diana Pangonis Director of Family Services diana@ntsad.org
Emily Randall Development Associate Lifeline Online is an electronic publication of NTSAD for families. Information contained in Lifeline is not intended to substitute for professional medical care. Always consult your Physician.
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NTSAD is now a partner of the online community, The Mighty. If you find it helpful to write and want to share, submit your work! Your words will undoubtedly resonate with someone else. NTSAD Lifeline Online - December 2016
The Holidays Kit did footprint/handprint reindeer crafts with her big sister. We have a real Christmas tree and I hope she likes the smell of it and the smell of gingerbread we baked. We sing Christmas carols to Kit. We try to have people over to our house because Kit can't travel far anymore. I think Kit likes to be surrounded by activity and the voices and snuggles of her friends and family! (Editor’s note: Kit earned her wings before the holidays but we wanted to keep this piece in her honor.)
Brianna (2nd from right) took part in The Nutcracker!
Brooklyn always loved helping decorate the tree!
Santa visited Madi last year to help keep her healthy.
NTSAD Lifeline Online - December 2016
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Kat and Morgan with Santa (aka Dad)
Ben with Santa We are very lucky that my company does two Santa days. One for the masses and another, very low-key day for those with special needs. This is our 4th year in a row and Isaac gets plenty of time with Santa without lots of people and germs! Plenty of time to get him on and out of his wheelchair. We also try to make or buy and designate a special ornament to mark the year and celebrate each individual Christmas with Isaac.
Two of my favorite holiday memories - Santa came to visit with the help of hospice one year and the local fire depart the next!
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NTSAD Lifeline Online - December 2016
For us we are trying to maintain what we already have done. Taking on more would be too much. And yet, we are newly a family of four. So, we are trying to balance what is likely Cora's last Christmas and Tessa's first. My family has a huge celebration with all of Cora and Tessa's cousins. Each year they put on a nativity play and the youngest is baby Jesus. It'll be Tessa's turn this year and Cora will be a lamb. Also, our girls always have their pictures taken with Santa, which is a lot of fun.
Keeton Elder Gingerbread House decorating day
Jessie with Santa!
NTSAD Lifeline Online - December 2016
This is Emma 1999....age 2. It's a good picture with memories because our stockings are hanging behind us. Mine is the red...original from childhood. When I married Eric my mom mad his which is green. Emma was born so we combined the colors, and hers is the white one. The other is the dogs. We continue to hang Emma's stocking every year, where ever we move.
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Cooper, his siblings & Santa! Talia loves candle light.
Dylan making Christmas cookies with his teacher.
Remembering Seth Cute little smirky smile. Sean & Chris De Pinto in Toronto enjoying the Holiday sights.
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NTSAD Lifeline Online - December 2016
Barry, his girlfriend Sarah, and Barry’s fam-
Ms. Kylie with Santa
John P. sent us a picture from a Christmas in the past and long before knowing about Tay-Sachs.
Paul and Sue Krauss, Christmas 2016, Florida
Thanks to all of you who shared your images with us this holiday. May 2017 bring blessings, cures, good health, love and peace for you all and your loved ones!
NTSAD Lifeline Online - December 2016
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In memory Our NTSAD Family has had to say goodbye to these dear children. Please take a moment, read their names aloud and hug those you hold dear in their honor.
Porter Heatherly
Received his wings on November 10, 2016
Emma Grace Tucker Received her wings on December 19, 2016
Alyssa Tyner
Received her wings on December 5, 2016
Kit Hadfield Payette Received her wings on December 16, 2016
“Don’t write your name in the sand, waves will wash it away. Don’t write your name in the sky, the wind may blow it away. Write your name in the hearts of people you come in touch with. That’s where it will stay.” - Anonymous